Community Forum Archive

I don't know what to do anymore...

Sat, 07/15/2017 - 03:12
Hey to anyone who actually reads this, I'm Aleisha, I'm 16 and in Grade 12. I have a million things wrong with me. They have been trying to figure out me epilepsy for 3 years now, and still haven't. I have absences, auras, tonic clonic seizures, myoclonic jerks, migraines, concentration problems, paralysis in my legs sometimes, and severe anxiety. WAHOO! I honestly feel like I have lost 90% of my dignity. I had my first big seizure at a massive city festival in front of thousands of people. I was always worried about having them at school, but everytime I did, there weren't many people there, and they were mostly teachers and my friends... Until yesterday. Yesterday we were just finishing the last race of the sports carnival and I had a seizure. In front of hundreds of students and teachers that I have to see every day. I peed my pants, convulsed, cried like an idiot, fell down, got wheeled of in a wheel chair unconscious and did I mention peed my pants? I was almost six months clear. I feel like a failure. Does anyone know if there is anything I can do to get it under control. I am open to anything, absolutely anything because my plans haven't worked haha.


Have you talked to your neuro

Submitted by disneylover123 on Sat, 2017-07-15 - 19:17
Have you talked to your neuro about other possible treatments besides normal medications? 

since you don't say what you

Submitted by Amy Jo on Sun, 2017-07-16 - 08:40
since you don't say what you and the docs have done, I don't know if anything I ask/suggest will matter..are you working with a pediatric epileptologist? for all epilepsy patients seeing an epileptologist is associated with better control and few meds (fewer meds usually means fewer side effects and better quality of life). how much do you know about your epilepsy? I am certain that no one else cares like you do. often educating yourself provides you with some info or understanding that can help you.has your doc checked you for celiac issues? have you asked your doc about proactive measures you can take (reducing triggers, better sleep/diet, yoga or other stress relieving practers, etc..)have you asked your doc about dietary therapy?  MAD might be enough to really help or ketogenic might help (MAD is probably easier and you might not need to start that in a hospital).have you asked your doc if there's a surgery that might help, either a resection or VNS (don't think RNS is available for under 18 but that's another one)?

do you have sleep problems

Submitted by iceburg on Fri, 2017-07-21 - 22:49
do you have sleep problems,are you hyperventilating,is your mouth dry.etc

Hi Aleisha Grace, my name is

Submitted by wilkins on Fri, 2018-04-13 - 20:06
Hi Aleisha Grace, my name is Lori please don't feel like you have lost your dignity. It is a good thing to talk to your neurologist about good options. You might mention a sleep study test to help diagnose things better. I have had seizures since I was 17 and some where in front of my kids. You should check and see if there is a support group that you can find support with. I hope you find good treatment and be positive about yourself, having a disability does not mean you cant live a great life. good luck.

Hi Aleisha, Perseverance,

Submitted by Drugfreewithketogenic on Thu, 2018-05-17 - 15:51
Hi Aleisha, Perseverance, first , learn about nutrition, lots of you tube videos, I like Tom delauer? He is a celebrity fitness guy but I like his explanations, just find someone who you can relate to on “ketogenic and or modified Atkins diet”, I don’t know you and this next statement Is NOT PERSONAL... ask yourself a few questions, do you enjoy epilepsy? Are you enjoying attention, or do you want to end up in chronic pain and or depression etc when your fifty? I’m just laying out mistakes I made along my journey, I’m not saying I like being a victim, but I did think I could eat whatever or have a glass of wine while I’m paint8ng or eat junk and it wouldn’t matter"..... fast forward ten years, chronic pain anxiety and derpression took hold, I’m fighting back with modified Atkins diet, being on it since July 2017: tremors stopped in upper left side of head, wether it was a side effect of medication or when I went to high fat diet modified Atkins diet, they miraculously stopped, today my doctor has lowered meds from 400 day to 200 day, we are in control of our bodies, our envir9nmentts etc, YOU CAN DO this, and it will be exciting t9 hear about your success, best Shannon

Hi I’m 25 and I have absence

Submitted by Mariah93 on Wed, 2018-10-31 - 23:39
Hi I’m 25 and I have absence seizures the myoclonic jerks and sometimes I get the tonic clonic. I got diagnosed with epilepsy when I was 15 I was just a freshman in high school. As I got older I starated to accept the fact that I had epilepsy and the more I accepted it the better I felt about myself. So maybe try that.

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